LISTEN & CHAT
Shooting pains wake me up at 3am and in my mind all I can think is “not again”.
I try to lay as still as I can for a while incase the pain was actually in my dream. It wasn’t and it’s bad. I crawl out of bed and into my office to search for the strongest painkillers I can find. I know it’s not necessarily normal to keep a stash of painkillers in every room of the house, but needs must. I swallow them, willing them to work. I crawl back into bed, the covers feel heavy and hot but I’m shivering from the pain. It shudders its way through my body, I grip onto my stomach, I am sweating and I can barely breathe. It’s a burning knife inside of my ovaries, ripping it’s way through my body. I get goosebumps and my eyes water. My head pounds. I’m on the brink of wondering if I need to go to Hospital. Is it starting to calm down? I’m not sure. I feel absolutely terrified. I feel alone.
And then it stops.
But, I know it will be back, it always is.
Like many of us, I explain the pain to so many Doctors, and they reply –
“I am not prepared to cut you open on a gut feeling”
“It’s probably ibs”
The blank look on their faces is something I am so familiar with.
Two years later and I’ve just woken up from my laparoscopy. I’m wheeled back to my hospital room. No one is waiting to greet me because there are no guests allowed during covid. I would do anything to see a familiar face right now. I reach for my phone but I don’t have the energy to do anything with it. The consultant walks in and I can tell by her face that there’s an issue. I have stage 4 endometriosis, oh and it can’t be removed yet. The room spins and I try to keep my tears inward. The consultant is speaking, something about my bowel, something about having children first, something about a specialist centre. I cry. It’s a blur. I want to go home. She leaves the room and I try to get myself together. I pick up my phone.
How do you tell your loved ones something like this via a text message?
When the pains started to get worse and more frequent, I suspected I had endometriosis. With a family history and a long list of potential symptoms, my gut feeling told me it was most likely on the cards. I asked for investigations two years ago and was told no, so I put it to the back of my mind and focused on help for the miscarriages. I had never really linked the miscarriages with the endometriosis symptoms (maybe because no Doctor ever mentioned it to me either, or took it seriously) Looking back now, I’ve unknowingly had symptoms for years. The reason I didn’t look into it more?
Because no one ever speaks about it.
Being diagnosed with stage 4 endometriosis shook my world, like an internal earthquake. Prior to this, I was feeling the strongest I had in a while, I had spoken to Sky News & BBC in the space of a week about the emotional stress of recurrent miscarriage – I was starting to feel like I could make a change, somehow. I had hopes of starting up my podcast and speaking to Women about loss. I was reading about positive thinking when it comes to pregnancy and how it can change things. I felt I could speak about miscarriage to anyone that asked without the lump in my throat showing it’s face. A little bit of hope started to creep it’s way in but the operation and dread it caused was always still looming.
I felt like I was starting over, right back from square one, the day I walked out of the Hospital. I don’t feel strong. I am the saddest I have been in a while and in all honestly, the feeling is similar to those I experienced the days following my miscarriages. I have so much to learn, faced with another battle to find the help I need, I have to search and dig for the resources and knowledge. It feels personal all over again, like it should be something I keep from the world.
So, why am I writing about this here?
I decided to share this for the same reasons I did with sharing my miscarriages – for anyone else diagnosed with endo or something similar. For those of you who have been living with an incurable disorder for a while, whilst perhaps dealing with the painful, consuming grips of infertility. For those of you trying to navigate life alongside excruciating pain. For those of you wondering if maybe you have it too. For those of you who wish it was spoken about more, spoken about earlier in your lifetime, discussed in your friendship group more, for you to feel less alone.
It turns out that the emotional feelings that are linked to miscarriage are similar to those with endometriosis too. I have had similar messages on both subjects – feeling of isolation, loneliness, confusion, anger, sadness, pain and not being taken seriously. No one talks about it, no one asks me about it.. it’s another taboo subject that’s hidden from the masses, when in fact so many of us do have it…
1 in 10 Women infact.
Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes. Endometriosis can affect women of any age. It’s a long-term condition that can have a significant impact on your life. More info can be found on the NHS website, here.
Why should we suffer in silence?
I’m still getting to grips with my diagnosis – it feels bizarre to finally have some sort of idea on why things have been harder for us, but also for the symptoms I have had (some for years) and always wondered, why? I have always pondered how it would feel to have some answers and it felt like it would always be a positive moment.. but I’ll admit, this didn’t feel how I imagined. I realise now that it’s because I was hoping for the answers I wanted, which were far from the diagnosis I gained.
I’m angry that Women’s health is rarely taken seriously.
Our miscarriage experience has taught me a lot about patience and giving myself time to heal. I know I need to work on myself for a little while, to dig out the positive thoughts once more and feel strong enough to face this all head on, again. I’m also able to realise that this is emotionally heavy and another bout of trauma that I must deal with in the correct way.
So that’s what I’ll do.